Sitting Down with Rosa Parks

7 Feb 2010

Tomorrow morning I gotta get back to writing the book—I gotta write the Bailey chapter—and I can’t if I don’t get this out first. But I feel so inarticulate, so in the middle of history, so much stuck before the story becomes clear. Bear with me in my muddled state, please.

Yesterday afternoon, I sat down with the ghost of Rosa Parks, on the very bus where she signaled to the world that her patience for injustice had run out. I found myself there by accident, but what good timing.

We had gone to the Henry Ford Museum in Detroit yesterday morning for a day off, me and my boys. I was looking forward to escaping from the dex bomb for a bit. I’d spent the last two weeks with dex 24/7, even dreaming about it during the few hours of sleep I managed to steal. I figured it would be good to spend most of a day really away from dex, looking at old trains and tractors and factory machines. My son and the mate are always good company, especially in the presence of large steam devices.

But I found myself now and then checking my mail on my phone. My friends and colleagues Hilde Lindemann and Ellen Feder were working on our post for Bioethics Forum about dex, and I didn’t want to leave them in the lurch if they needed something from me. Hilde and Ellen have been downright magnificent in all this. I don’t know what I would have done without them. Ellen’s acting as corresponding author on our letters to the authorities; Hilde has been the godmother of this project within Bioethics, and what a godmother she makes. Mostly the two of them have retained with me a clear sense of conviction that, though this is uncomfortable, it is also necessary.

We three were trying yesterday together to understand the reluctance on the part of the Bioethics Forum editor to publish what we’d written. It seems obvious to Ellen, Hilde, and me that what we’re seeing with dex should alarm any bioethicist.

How can you learn that Maria New refuses to answer questions about the informed consent of the pregnant women to whom she is recommending dex and not be alarmed as a bioethicist? How can you look at the CARES Foundation page from Weill-Cornell that assures women dex “appears to be safe for mother and child” with “no adverse developmental consequences” when a Weill-Cornell team published on adverse consequences a couple of years before, and not be downright frantic about these women’s right to informed consent?

But dex has been forcing me to realize something incredibly uncomfortable, namely that Bioethics isn’t about social justice. It’s one big self-employment game. In fact, Bioethics often gets in the way of social justice, by making the public think someone is actually doing something about injustice in medicine. By sucking up public funds that might actually go towards making medicine safer for people who are endangered by the status quo.

The truth is, most bioethicists just want to get through their days and their careers not getting into any real-world ethical tangles. They just want to do what they get rewarded for: writing publications and getting grants to ask interesting questions.

They look a lot like the docs in the Tuskegee Syphilis Study: busy doing what they’re rewarded for, getting grants and pubs. The Tuskegee Study docs were not rewarded for healthier outcomes. And the Bioethicists are not rewarded for more ethical outcomes. And people are mammals. They do what they are rewarded for.

They certainly can’t imagine taking on an issue that is not about their own identities.

My son, who is now in fourth grade, has been studying the Civil War. He asked me the other day, as I paused from struggling with the dex bomb to help him with his homework, “Was Lincoln a freed black?”

I realized he thought that Lincoln must have been of African descent, to care about the slaves as he did.

“Sweetie,” I said, “you know who our first black President is.”

“Oh right,” he said. “Obama.”

I pressed him to think about it: Why did Lincoln work to free the slaves? Because he was a Northerner, my son guessed. Plenty of Northerners did nothing to help the slaves, I pointed out. What made Lincoln special? He was tall, my son answered. I laughed: Yes, Lincoln was tall. But what about his moral character?

“Oh, he was good and brave,” my son answered.

“Yes,” I said. “Like all of us should be. Right?” (I flashed back to remembering that, when I was pregnant with my son, we had considered naming a baby girl Rosa, after Rosa Parks, and we had considered naming a boy Ernie, after Ernie Green, of the Little Rock Nine. Some friend had said, “Why not just name the baby Green Parks? Throw in some environmentalism there, too.”)

When in the midst of the endless rounds of edits the Bioethics Forum editor put to me a hypothetical he wanted me to take time to answer—what if dex did work every time with no risk and what if it was only used on the fetuses who actually were 46,XX CAH-affected females—man, I just wanted to scream. Hypotheticals are the luxury of people whose families are essentially safe and sound. In medical ethics, hypotheticals are like Rolexes; they let you know who is seriously privileged.

Hilde, Ellen, me—we just kept talking about those pregnant women as real people like us who might be getting dragged into experiments without even realizing it....

Here was the conclusion the editor consistently declined to take:

Apparently, it is still true that, when you get labeled sexually abnormal, all the normal rules simply don’t apply to you. Nor, it seems, to your mother.

What exactly was too hot to handle about that line? Something. The folks at the Hastings Center have something at stake that makes that line some kind of anti-reward. I’ve published twenty-five essays with them. Never have I had the kind of weird problems they’re giving me on this essay. Something is up.

I was trying to constantly keep in mind the good people I’m dealing with. But it was impossible for me, as I was teaching Tuskegee this very week to my class, not to remember that the folks of the Tuskgee Syphilis Study were basically good people who just couldn’t see beyond their reward system to see what they were part of. I’m not saying the Hastings Center is the equivalent of the Public Health Service in the Tuskegee disaster. I’m just saying I know better than to think good intentions protect us from making ethical mistakes. I live in fear of letting my sense of goodness blind me to doing harm.

More than one person at the Center had tried to tell me that it looks like what New is doing may not be technically against the regulations. I put this to Aron, the mate. Aron made the gesture he makes when he is fed up—he waved his hands in front of his face as if there was a swarm of gnats in front of him.

“The concentration camps were legal in Germany,” he said. “Involuntary sterilization was legal in Indiana,” he added. “There was nothing illegal about the Tuskegee Syphilis Study. Prenatal dex is just the kind of thing that changes the regulations for the better.”

Aron’s been so great throughout this, since Day One, two weeks ago, when I told him, “I’m about to mobilize the troops. It’s going to cost a few weeks away from the book, and about a thousand dollars in cash,” and he said, “Go for it.” He had looked over New’s papers with me, and saw what I saw: serious cause for alarm.

I realized about five days ago, as I rushed to do the laundry and the dishes and cook some dinner in the midst of all this, that, sure, I wished I had a wife, but that I had something even better: a real husband. Like a nineteenth-century Suffragist, I had a husband who paid for my ability to do all this, who was willing to risk what I was risking to make this happen.

Not much of a risk, though: I knew from my informants that we are right, and we’re going to be shown to be right. All signs point to us having read all this craziness correctly.

And most everyone I’ve called upon personally has been so great. I don’t know what I’d do without Janet Green who has fought with CARES from within for years, to try to make them see how they have to protect the CAH families from the high-intervention docs who have something other than these families’ health as their number one priority.

Janet just kept sending me wonderful mail telling me to keep moving, to keep pushing “Alice’s Army.” And then Janet put to me that the practices of the surgeon Dix Poppas ought to be next. Poppas pushes for “genital normalization” surgery on girls with big clits. He has bragged to us about how his patients turn out so well that some of them come back to him with their Dr. Poppas dolls. I have no idea what the hell he is talking about, but it scares me.

So a couple of days ago, I looked up Poppas’s papers, and discovered something that started to look like a pattern at Weill-Cornell: he has IRB approval for chart review—for the follow-up publications—but it doesn’t look like he got IRB approval for the practices he’s reporting on. Those practices? Cutting off parts of little girls’ clits, trying to make them less cosmetically “offensive,” and then putting electrical devices on their clits, months later, to see if the nerves still appear to be working. Yes, electrical impulse devices on little girls’ clits, to try and guess whether he cut off a bit too much, or maybe the “wrong” part. Who the hell knows if these girls are awake and aware of the devices Poppas is touching their genitals with, to see if their clits are likely to still work later? Or did he maybe cut too much off, and if he did, exactly what does he think he’s gonna be able to do about it?

I wrote to Ellen about this.  She answered with a reply that signaled she was as chilled as I felt. “Yeah, we gotta do something.”

What a relief, I told her, to feel like someone else gets it. Yes, yes, we gotta do something.

In the last year, I’ve been called a hero (in no uncertain terms) about ten times for standing up to injustice. But you know what? I don’t want to be seen as a hero. I want what I do to be seen as ordinary. And it was great, with Ellen’s response, to feel like I am perfectly ordinary in my outrage and my sense that we gotta do something. (I laughed at the idea that all I really want to do is to feel normal, not by having me change, but by having the world join me where I am: the atypical-anatomy experience.)

But a clinical colleague to whom I put the Poppas stuff as next said, “No, no, we have to have consensus talks with the surgeons. Yes, go after dex, but let us just talk to the surgeons and try to get them to see....” I put this to Aron, who bitterly replied, “Talking to surgeons who do this stuff is like talking to the Taliban.” (Man, has he gotten cynical watching this clinical bullshit for the last decade with me.) And as my colleague told me to slow down, in my mind, I flashed to MLK’s “Dream” speech:

We cannot turn back. There are those who are asking the devotees of civil rights, “When will you be satisfied?” [...] This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to make real the promises of democracy. [...] Now is the time to make justice a reality for all of God’s children.

I wrote those lines to Ellen, Hilde, and Janet, with the email subject “what MLK would want us to remember.” And they understood that what we are doing is struggling for the rights that are withheld from those who are still judged not by the content of their characters, but by the shape of their genital skin.

And the most excellent Anne Tamar-Mattis mobilized Advocates for Informed Choice to move with us. And a slew of academics began to move with us, to spread the word. I wrote to Mickey Diamond, asking him to remind me (to calm my anger) how long it took for people to believe what he had found about David Reimer, that John Money had lied...and Mickey wrote to say keep going, that he understands this and understands the struggle to get people to really see what we see still happening.

How perfect, then, to find myself yesterday at the Ford, where I expected only to find a temple to technology. Certainly, there were signs I had entered the Church of Technological Progress. I laughed at one machine (right) that really did have the arches of a cathedral.

But in the midst of the Church of Technological Progress was a big, unexpected exhibit on the history of democracy and civil rights. And Rosa Parks’ bus. What great perspective.

There was stuff about the Founding Fathers, with whom I am absolutely smitten. (No, seriously, I am. They were brave and smart and funny.) Even as I bristled at the editing of our Bioethics Forum post, I was reminded by one sign that Jefferson hated the editing of his Declaration of Independence. “I know how you feel, Tom,” I laughed to myself.

Another sign reminded me how long it took for women to get the vote (41 years between when Susan B. Anthony wrote the constitutional amendment and when it passed).

One artifact, a sign indicating separate bathrooms for whites and coloreds, brought me back to the claim of clinicians that you can’t go into a locker room with atypical genitalia. “Real men” versus “genital freaks,” I imagined the signs now saying, understanding fully the problem is the sign, not the people being sectioned off.

And then I came upon the sign on the side of the bus where Rosa Parks sat down. And it said this:






I thought to myself about how surely the docs prescribing dex would think of themselves that way: into safety, courtesy, service. Just doing their jobs. Just like the man who would have grasped the wheel of the bus that required black people like Rosa Parks to sit down in the back and shut up. It wasn’t him, right? It was simply the rules. He was just doing his job, right?

I thought about Claudette Colvin, who did it all before Rosa Parks, and reminded myself of how often it is necessary to give the media what they can stomach before they will help with injustice. I thought about how, after it is all over, the history seems obvious. And how, in the midst of it, so many people do not have the fortitude to see it through...

And I felt enormously grateful, to Aron, Janet, Ellen, Hilde, Anne, Mickey, on and on and on, for really getting it.

There are some people who like to say to me that they “can’t” do this work because they don’t have it in them. Some of them imply to me that I must enjoy it, and say that they don’t, and that’s why they don’t do it. They do not get that it is, ninety-eight percent of the time, miserable, terrifying, exhausting work.

We don’t do it because it is pleasurable. We know it is highly unlikely we will ever be rewarded for it, beyond lovely private thanks.

We do it out of a sense that it would simply be socially inappropriate not to do it. You don’t just walk by a pregnant woman in need and not give her a hand, you know? You don’t just watch a fundamental injustice that you can actually do something about, and do nothing.

When I came off of Rosa Parks’ bus, a stranger asked me, “Did you sit in her seat?” I looked at that man and didn’t know what to answer. I was crying. I was just so very, very tired.